general: how do you take your morning dos... - Cure Parkinson's

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general: how do you take your morning dose? do you take your C/L on empty stomach, with food or after?

daughter-Advocate profile image

& for those who are taking C/L 2x a day, how to spread out each pill? bottle may say 12 hours but that would cut into taking the second dose right before sleep which a neurologist in a different forum said not to do.

conflicted.

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daughter-Advocate profile image
daughter-Advocate
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36 Replies
wifeofparky profile image
wifeofparky

it is recommended to take C/L on an empty stomach- 1 hour before or 2 hours after a meal

daughter-Advocate profile image
daughter-Advocate in reply towifeofparky

thank you!

Shack2023 profile image
Shack2023

hi I take the first one about 6 am when I wake up and the second one at about 2pm.

daughter-Advocate profile image
daughter-Advocate in reply toShack2023

thank you for sharing!! it's a good dataset to have in my repository knowing how the dosage + time schedule works for others

Esperanto profile image
Esperanto

It is not clear to me how you can get a good spread of your C/L intake with only 2 doses per day. Wouldn't it be better to take 4 times half a dose to prevent unwanted peaks and troughs and also better functioning of the medication?

daughter-Advocate profile image
daughter-Advocate in reply toEsperanto

right? that was my concern but splitting it up 4x half a dose sounds like a better idea.

wifeofparky profile image
wifeofparky in reply todaughter-Advocate

always discuss doasge changes with your MDS first. He/she may have a reason why he ordered it that way.

park_bear profile image
park_bear

I take my final dose of the day just before bed and it works for me.

daughter-Advocate profile image
daughter-Advocate in reply topark_bear

thanks for sharing!

Zella23 profile image
Zella23

I sympathise with your frustration s at trying to help your father, it seems Neurologists are very different in their approach to meds.

My husband has both doses 25/100 and half doses. He keeps to 300 mgs a day spread out during the day, takes the last one about 6 pm. He has to keep doses low as dyskinesia can set in fairly quickly. Sometimes taking meds just after food helps with this and lowering the dose helped, but it is a work in progress and not always consistent. Spreadsheets help with keeping symptoms and doses but what works one day can change the next day.

He has been on PD meds for 8 years and has lowered C/L and 3 years ago had Rasagaline to help with lowering the dose.

He suffers from back pain which has been worsened by PD, he’s had treatment for it but it isn’t consistent either. Recently he has been given the Neupro patch (Rotigotine) to help with dyskinesias and his painful back. This might be something that might help your father as it is a dopamine agonist, you can start on a very low dose so hopefully won’t cause hallucinations as it feeds in gently to the system and doesn’t have to go through the digestive system.

daughter-Advocate profile image
daughter-Advocate in reply toZella23

🙏🙏🙏🙏🙏🤞🤞🙏🙏🙏 hi Zella23 thanks so much for your detailed reply! It's nice to hear from someone of similar background. I will look into the patch, keep the dyskinesia side effect + food schedule tracking in mind.

Bunny622023 profile image
Bunny622023

Hi DaughterPD :-)

My husband has been taking C/L for 17 years - he is 61. He has always had them spaced throughout the day approx every 4 hours which is more doses than your Dad. He has never worried about whether he takes on empty stomach or with food and he takes his last dose often, depending on how early or how late he gets up in the morning, sometimes as late as midnight. It's never affected his sleep or his gut "That we know of" . For many pwp, that doesn't work with the stomach or sleep, but for him it does, so far. I like Esparanto's answer though - halving throughout the day so more level. Many Neuros think differently on splitting pills as well though. We have split pills for years as rescue doses for when exercising, seems to work well for my husband. Good luck though. It's all trial and error in the end.

bigl62 profile image
bigl62

I take 2c/L at 8am,noon and 4pm . 8am 30mins before I eat.

judykuenn profile image
judykuenn

My hubs is on Rytary 3x a day, every 6 hours. Rytary can be taken with/without food but was cautioned to not eat with high protein meals as high protein foods slow down absorption of C/L...

Parkinsunny profile image
Parkinsunny

I take CL three times a day either 30-60 minutes before food, or at leeast an hour after. You are not supposed to take it with protein as that can effect the absorption. I had to research this as my Dr. Did not tell me, but everything I read said the same thing!

daughter-Advocate profile image
daughter-Advocate in reply toParkinsunny

Same! The doc didn't tell us that at all! We're gonna have to make some slight adjustments with that.

Dumb q - Does.. egg in the morning count as protein? Or is it red meat or any kind of meat protein?

Parkinsunny profile image
Parkinsunny in reply todaughter-Advocate

i believe all protein, or I just assumed that!

BoomMate112055 profile image
BoomMate112055

I take my first C/L + Synthroid at 7am on an empty stomach, my 2nd C/L at noon, 3rd C/L between 5-6pm and my 4th C/L is extended release at midnight.

michelagvolpe profile image
michelagvolpe

I'm starting to take 400 mg sinemet per day. Neurologist said at these hours: 7am, 11am, 3pm, 7pm. I think they are too close. So I take the pills every 5 hours instead of 4 hours.

Esperanto profile image
Esperanto in reply tomichelagvolpe

Normally 3.5 hours is ideal with Sinemet IR. If you experience that even 5 hours is possible, you might wonder if 400 mg as a starter is not too much. Although it is the dosage that most neurologists start by default, that is actually quite rude. Oddly enough, you should not stop taking Sinemet all at once, but you can immediately give the full dose. You might also be able to start with 5 x 50mg.

My experience: The 400 mg was expanded to 500 mg within a month and in one year doubled to 1000 mg. After 2 and a half years and finding balance with the help of HU, I am back below my initial level with 300 gr. (4 x 50 mg IR and 1 x 100 mg LP). I haven't seen my neurologist in almost a year. Apparently he doesn't want to learn from his mistakes.

🍀

daughter-Advocate profile image
daughter-Advocate in reply toEsperanto

would a half pill of 25/100 sinemet last 1hr & 45 mins?

Esperanto profile image
Esperanto in reply todaughter-Advocate

A graph of my different dosages with John Turner's measurement model. You can see that after 1h45 the effectiveness is still above average. The buildup is fairly balanced in terms of levodopa distribution and currently works fine with 50 mg IR and 100 mg ER in the evening. However, it is about the principle of the chosen intervals. A month ago, the schedule also worked at a double dose.

Plasma graph 4 x 50 mg C/L IR + 1 x 100 mg C/L ER with intervals 3,5 hours
michelagvolpe profile image
michelagvolpe

I 've taken 300mg per day with pramipexole since March 2023 (before I've taken 300 mg since 2021) , I stopped now pramipexole due to stomach problems, so I have to take more sinemet (400mg) as my doctor said, but she told me to take it every 4 hours. I think it is better every 5 hours, the last pill at 10pm so I can sleep better.

Esperanto profile image
Esperanto in reply tomichelagvolpe

5 hour interval is still reasonable with Sinemet CR, but with IR there are too large peaks and troughs, with increasing risk of side effects. In that case, take smaller doses more often.

michelagvolpe profile image
michelagvolpe in reply toEsperanto

mine is CR

jeeves19 profile image
jeeves19

I’m still reeling from the idea that someone can just take 2 doses in a day 😂👍. Oh how I yearn for those halcyon days!

Sane1 profile image
Sane1

I have always taken my C/L about 10 AM and 10-11 PM. Taking it late at night I feel well in the morning. It will start to wear off give or take around 10 AM. I intermittent fast and eat between 12 PM and 8 PM therefore I don't worry about meals interfering with the meds. I also sometimes have to take night calls in my job and this assures I have my C/L still on board. My Neuro questions my regimen but is OK with it as long as it works for me.

Esperanto profile image
Esperanto in reply toSane1

Hi Sane1, I am very curious how you react to your (only) C/L medication during daytime. Can you describe that. What dosage? I assume it's a CR.

Sane1 profile image
Sane1 in reply toEsperanto

Esperanto my C/L is 50/200 ER. Thus far I’m fairly functional with this dose. I do have an immediate release 25/100 oral dissolving tablet that I can take if I need a kick going into a stressful situation. I don’t use them often. I also take Pramipexole and Rasagiline with my nighttime C/L which I believe helps. Since I intermittent fast I’m usually taking the C/L on an empty stomach though not necessary. I just try to space out the protein. I’m sure at some point I will have to increase my dosage thus read with interest how everyone deals with spacing meds.

daughter-Advocate profile image
daughter-Advocate in reply toSane1

Did your doc start you on the ER immediately or was that a request after you figured out what schedule worked for you?

Sane1 profile image
Sane1 in reply todaughter-Advocate

My neuro put me on Pramipexole and Rasagiline. He added the C/L ER about a year later-- twice a day. Same as now.

Esperanto profile image
Esperanto in reply toSane1

Sane1 if it works well you can leave it that way, but this is not completely without risks in the longer term, especially if your dose is ever increased. The peaks and troughs are then even more extreme. To illustrate the effectiveness of the dosage in a graph with John Turner's measurement model.

In addition, I suspect that with 200 mg you get too large a dose that fortunately in 12 hours has been used up so that no stacking can take place.

Also realise that most women just need 50% less L/C. This phenomenon is probably unknown to most neurologists.

healthunlocked.com/cure-par...

Plasma graph of 2 x 200 mg ER with interval of 12 hours.
Esperanto profile image
Esperanto in reply toSane1

The desired scheme of michelagvolpe therefore seems much more balanced to me due to a good spread over the day with 4 x 100 mg C/L ER.

Plasma graph 4 x 100 mg ER with interval of 5 hours
Sane1 profile image
Sane1 in reply toEsperanto

Thank you for this interesting information. I will have to pick it all apart to get a full grasp of it.

daughter-Advocate profile image
daughter-Advocate in reply toEsperanto

Wow thank you! How/where are you creating these charts?

Esperanto profile image
Esperanto in reply todaughter-Advocate

The app is created for about 10 years (?) by our active member johntPM, John Turner. 🙏 It is one of the most important tools for me to get a grip on the effect of the medication. John brought the app back to our attention 7 months ago with a brief explanation of its use and limitations.

healthunlocked.com/cure-par...

Here is the direct link to the app:

parkinsonsmeasurement.org/t...

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